- What form of IBD do you have?
The form of IBD that I have is Ulcerative Colitis which means my disease affects my digestive tract, specifically in my colon. When I was first diagnosed it was only the last couple of CM and was considered fairly mild, however about 5 years later the disease progressed throughout the entire large intestine and I was unable to achieve remission which is when I had my colon removed. I know some rhetoric around having a colectomy gives the impression that you can’t have a colitis if you don’t have a colon however after having mine removed, I would never say I am “cured”.
I have a J-Pouch now, which is an internal reservoir using my small intestine and by no means would I say my digestion is “normal,” as well as all the secondary side effects like canker sores, inflammation of the joints, (especially in my hands) and chronic fatigue ….so I definitely still say I have IBD
- Why is IBD advocacy important?
I try to advocate for people with IBD by simply sharing my story. I listen to other people’s stories, and connect to them or reach out to them. I think it’s easy to be embarrassed by this disease and want to hide, but I find it’s SO powerful to share our authentic selves and bare our souls to one another.
When I first started writing about IBD and having an ostomy, I decided my tag line would be “everybody comes with a little extra baggage,” because everyone is going through some shit. I honestly believe that if we just stopped and listened to people’s stories about not just hardship and struggle but rather resilience and bravery, we would live in a world with so much more compassion and empathy. So my little bit of work in the IBD community has very simply been by just sharing my story of all the guts and glory and trust that people will be kind and open minded, and in turn share theirs.
- Name a Socially awkward moment?
There are SO many stories I could share. When I was very ill there were multiple times I had accidents in very public places like in grocery stores, restaurants or in my car. This is the same with having an ostomy, I can relate to panicked moments of having leaks or needing to change my appliance in a gas station.
But there is one moment that really comes to mind. Because I work in child care, I’m considered part of ratio and can never leave the children on their own. One of the worst parts of having IBD for me was the urgency and incontinence, so not having immediate access to a washroom was really problematic for me. Thankfully I had an amazing Director who was incredibly understanding. One afternoon I was with a group of kids and needed the washroom so I called her on the walkie talkie to come relieve me, and then sprinted to the washroom where I spent probably 10-15 minutes. I felt awful because I knew how much work she had to do and it wasn’t her job to be in program with the kids but here I was taking up her time. By the time I walked back to my kids, I had to go to the washroom again, and just told her, “sorry you can’t leave yet,” as I just turned around and went back.
This moment was particularly hard because it was when I realized I was in no condition to be working. I couldn’t run a successful program if I couldn’t even get out of the washroom, and I really just was too sick to be there so this was the moment that I knew I had to ask for my first leave of absence.
- A common stigma you have run in to:
I know so many people want to help and offer advice but one of the most common stigmas I run into is that by changing your diet you can cure your flare up. This is really not true. It’s an autoimmune disease, it’s systemic and by going vegan, gluten free, dairy free, vegetarian, it will not cure you. Neither will essential oils, yoga, exercise, or natural supplements.
Do not get me wrong, I strongly, strongly believe in natural, organic remedies, a clean and healthy diet with proper nutrition and hydration, and that a holistic approach to your well being is so benefical to your health, and very likely will help your IBD. But in reality there is no known cause or proven cure and I personally was very resistant to people trying to cure my flare up by telling me to just mediate more. It’s hard not to be insulted because as a patient you bet your ass I was doing EVERYTHING I could to save that little organ of mine
- What do you want other people to know about IBD
I think people forget that there is a massive mental and emotional piece that comes with IBD so it’s just as important to take care of your thoughts and heart and holistic well being. For me personally the mental toll really came after I had my colon removed, and there really isn’t a lot of support in the medical community for your emotional wellness, so it’s really important to be proactive and advocate for yourself when you notice something else is “off” inside of you. I could honestly talk for hours about the mental impact IBD causes for patients but I just want other people to know that although people may look okay, physically IBD is really hidden and that rings true even if they’re in remission too, so again reaching out to one another is so so important and being kind and connecting to other people is really powerful.
That being said it’s also so important to continuing fundraising and raising awareness, so there is a MASSIVE amount of gratitude I feel for anyone who donated to this year’s Gutsy Walk. We raised over $6000 for Crohn’s and Colitis Canada and I cannot express how appreciative that support is. Even just simply showing up to walk beside us means the WORLD and I’ll never accurately be able to explain my humble thanks.
Keep talking. Keep sharing. Keep helping to carry others’baggage.
One thought on “IBD Advocacy”
This is a great post. Do you mind if I use these questions for a post on my site? I am all about raising the awareness of IBD x
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